I posted my results below a little while ago and I’m currently trying to find my feet with a combination of T4 and T3. Here are my latest results after being on 75mcg T4 and 10mcg T3:
TSH - 0.006 (0.27-4.2)
T3 - 5 (3.1-6.8)
T4 - 20.2 (12-22)
The symptoms I’m trying to address is the fact I feel so hypothyroid in the mornings and for most part of the day. It’s like I’ve got a really bad hangover or like I’ve been drugged. I take my 75mcg T4 first thing in the morning along with my first dose of T3. It doesn’t seem to matter if I take 5mcg/10mcg/2.5mcg of T3 first thing, I still feel really groggy like I can’t wake up. I don’t feel better until early evening after I’ve taken my second dose of T3 (11-12 hours later) as this picks me up really quickly and I feel SO MUCH better! The second dose is only 2.5mcg of T3.
I’m wondering if the T4 is the issue rather than the T3 dosing I.e. the T4 is either too much or too much in one go. Looking at my blood test results, I believe the consensus is that my T4 levels look “good” but do some people feel better with low T4 I wonder I.e. out of range? I know some people are on T3 only for example…..but is that because they have naturally high T4 levels?
I’m contemplating what to test next as I only feel good for a few hours a day (after my second T3 dose) but this is still better than when I wasn’t on any T3. I did try three doses of T3 but that made me feel worse than two doses. I could try:
A) reducing my T4 by 12.5mcg to 62.5
B) taking my 75mcg of T4 at night and keep my T3 the same (10mcg T3 first thing with second 2.5mcg dose 11-12 hours later).
C) splitting my T4 dose say 50mcg am and 25mcg bedtime.
Any ideas of advice would be welcome, I’d really like to understand why I feel so bad for most of the day but then it’s like a ‘miracle’ and I’m ‘cured’ around 6-7pm when I feel well. Could it be because the T4 levels have run down for example and I can get more benefit from the T3? I’ve no idea how this all works and I know we are individuals and respond to things differently but there might be some words of wisdom out there as to what might be causing these lows and highs. I’m also not loosing an ounce of weight even if I eat super healthy so I know things are not right with my metabolism and certainly not with my energy levels and mood.
Thank you everyone xx
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TiredMummy
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Thank you SlowDragon. So I took my 75mcg Levo at 6:50 this morning (later than usual due to half term). Am I ok taking another 75mcg at bedtime tonight? And then just the T3 dosing as usual during the day…Wondered whether I needed to phase the T4 change or just make the switch in one go which I think you are suggesting?
i can empathise , but not be help much as i'm having the same sort of 'timing/ dose ' issues with adding T3. so far it seems like i'm learning how to drive a digger with multiple knobs and levers that can be twiddled , rather than just driving a dodgem which was the case when using levo only.
initially it seemed promising , then after a few wks it was making me feel pants until 7 hrs after taking it when i'd feel ok again ,
for several wks it was ok to take a dose at bedtime .. then all of a sudden it wasn't and kept me awake.
i've increased levo which has helped . but i was pretty hypo (TSH 5) on 87.5mcg levo when i started adding 6mcg then 9mcg T3, and despite the high TSH i had initially lowered levo to 75 due to fT4 being 91% .... but lowering by just 12.5mcg and adding 9mcg T3 had lowered my fT4 by a surprising amount to 56%
putting levo back up to 87.5mcg helped for a while , but then i had issues again, so currently trying 100mcg Levo with less T3 (just 4mcg T4 taken at 11.30 am) .... which has definitely been better for the 2 wks i've been doing it so far
basically, (as you can probably tell !) i'm still very much in 'headless chicken' mode , and i started adding it in july .... just so you know you're not alone
Thanks Tattybogle, I can identify with your analogies! Interesting that your T4 went down after introducing T3….ive heard previously that T3 lowers T4 but maybe that depends on the person too. I think if I try taking my Levo tonight and feel ‘better’ tomorrow and then start to feel worse…..that might indicate that I actually need to increase rather than reduce my Levothyroxine. It’s almost like you need to make a medication change, get your bloods done 8 weeks later, make no changes to your meds, get another set of bloods in another 8 weeks time and see what they say. It’s incredibly slow going all of this!
for the moment i've given up trying to find logical explanations , currently following my nose and 'driving blind' , and despite the fact that i know very well how important it is to be consistent and wait long enough etc etc ...... i'm finding it a massive struggle to stop myself wanting to fiddle with the knobs every 3 wks
My suggestion would be (D) to take your T3 & 4 as a single dose in the morning to see how that feels, I wonder if the morning groggy feeling is down to low cortisol which is needed to fire you up and with T3 uptake...
If that doesn't help (E) I'd be inclined to try the same but before bed
Hi TigerMe, I really don’t think just adding in 2.5mcg T3 first thing is going to help matters. I already take 10mcg T3 and 75mcg T4 together first thing and have the symptoms I’ve described…. Perhaps option E in that case might be a better bet. It could be low cortisol, but even if it was (proved by testing) what can I actually do about it?
I'm thinking it was only 3 weeks ago you were on 10mcg split and saying you were starting to feel better? So taking 12.5mcg first thing or even better if you get up for a wee between 4-6am can help to raise morning cortisol in some
I have low cortisol and take adrenal glandular which last year I swapped to low dose hydrocortisone and then back to the glandular and it has made all the difference, not hugely increased but enough to find my inner Tigger 🐅
I’d be very interested in the glandular you have taken as I think I need to try and heal the adrenals again but this time with the help of T3. I’m thinking of taking my T4 tonight and then the T3 in the morning. Does that make sense now we think it’s my adrenals?
T4 being a storage hormone it doesn't make too much difference when you take it unless you find it affects you... can you remember your cortisol saliva results were they just low or up and down at perhaps unusual times?
I've taken various ones but best to stick with Adrenal Cortex to avoid the medulla in whole adrenal, which may contain adrenalin which causes some issues, also need to make sure you get a decent amount of Vit C and salt
I can look up my adrenal results but they are from a long time ago. From memory they were too low on rising them peaked at midday but the result did improve over time but not to the extent that I actually felt much better. Probably because I was on T4 only. Thanks for the tip on the adrenal supplements.
Hi TigerMe, can I ask how much cortex a day you are taking? I now have some capsules that contain 50mg of bovine adrenal cortex each capsule. I think my adrenals might be very weak as I have dark circles under my eyes and the mornings are extremely challenging….
TiredMummy Please get an early morning (8-9am) cortisol blood test done before taking anything. If your level is low, you will likely be started on hydrocortisone and have further testing done to identify the cause (some causes require additional treatment).
Thanks JumpJiving, I’ll get one booked in but I suspect your levels needs to be chronically low to be recognised on the NHS and a blood test is just a snapshot. I’ve done saliva testing as well as 24 hour urine testing in the past. Blood test (as far as the NHS were concerned) was ‘fine’ whereas saliva and urine showed my cortisol was very low in the mornings. It could be that my cortisol levels have declined over time though so still worth having a blood test like you say.
Thank you I’ve actually just realised Medichecks offer a cortisol blood test so I’ve just ordered one. The guidelines you’ve provided are very helpful, thank you. I’ll see what the results say! I agree that doctors are much more likely to respond to a blood test but I suspect it will come back ‘normal’ which is a joke but let’s see! Who knows, my cortisol might be too high so you are quite right to suggest this testing - thank you for caring xxx
TiredMummy It was a Medichecks test that first identified my adrenal insufficiency. They clocked my early morning cortisol at 66nmol/L. To avoid your GP being a pain (not because of time of testing, but mine put my life at risk by adding delays re-testing because they are so snooty about private tests), make sure to do the blood draw between 8-9am. Good luck xx
Can I ask if it’s ok to take my thyroid meds a couple of hours before the cortisol blood test? Do you know if I need to stop vitamins etc in advance? x
I have seen others recommend delaying thyroid meds until after the early morning cortisol test is done, but I really don't know how much difference it would make, if any. Avoiding steroids, oestrogen and vigorous exercise are the main bits. Oestrogen has to be stopped 6 weeks in advance I believe. For steroids, just don't take any before the test that morning, or if safe to do so, the evening before either For those where this is relevant, stopping oestrogen can make your cortisol levels drop, so speak to doctor if this is relevant. For steroids, if delaying the morning dose or skipping the previous evening dose would be unsafe, speak to a doctor.
Hi, just thought I’d update on my cortisol blood test, it was higher than I was expecting at 284 (166-507) so I’d imagine this is close enough to 300 to not cause concern. I did the test fasting at 8am.
"The committee also defined a range of values from 150 to 300 nmol/L in which the results of the 9 am serum cortisol may not be an adequate indicator of adrenal insufficiency on its own. They explained that when these readings are combined with further evidence in the form of clinical presentation or with results from electrolyte readings, they may be more indicative of adrenal insufficiency. The committee deliberated over the upper threshold of this ‘grey zone’, weighing up the risk of false negative results against the impact of offering more people additional testing. They therefore decided that people should be retested if the number was between 150 and 300 nmol/l/ and if the reading remains in this ‘grey zone’ they should then be referred to endocrinology if serum cortisol remains at that level. "
TiredMummy Unfortunately, I've not seen any guidelines about how long to leave before re-testing. I hit the same question just last week as a couple of my other blood tests suddenly came up with over-range figures, for things that could be transient blips, or that could be something more significant.
Ok thanks, I might start another thread to see if we can learn from any others. My gut feel is it will make no difference as it’s a snapshot annyway and perhaps I’ll do the test at 9am rather than 8am as levels may have come down further….
Yes, it could be…I will start with the morning blood test as my instinct still tells me it’s low cortisol causing my symptoms but let’s see as I could be completely wrong! x
TiredMummy I believe that you've done tests for vitamin levels in the past. Have you got recent results for B12, D, folate and ferritin? Also, have you got a recent early morning (8-9am) cortisol blood test result?
Are you taking any steroid-based medication (including tablets, inhalers, ointments, etc)? Are you using oral contraceptives or HRT?
Hi, I had a full vitamin test done not long ago and everything was much improved so I don’t think it’s that. I haven’t had a cortisol test done in recent years…I thought saliva tests for cortisol were more reliable but I have no idea if that’s true. I’m not taking any steroid based meds and not on any HRT.
To check for low cortisol, the most widely accepted test is the early morning cortisol blood test, typically done 8-9am (the timing assumes that patients are not shift workers, jet-lagged, or serious insomniacs). Saliva cortisol tests are more likely to be used when expecting high cortisol, not low cortisol, although one major hospital is now using saliva for both. TBH, if you want doctors to act based on the results, it is far better to go for blood rather than saliva for cortisol testing.
I agree with TiggerMe , this sounds more like a cortisol problem than a T3 problem. Your adrenals are fatigued and struggling to make their early-morning quota of cortisol, and only manage it around 6/7 pm.
What I'm wondering is why your FT4 is so high - probably too high - when you're only on a small dose of levo and taking T3. Do you have Hashi's?
I know some people are on T3 only for example…..but is that because they have naturally high T4 levels?
If one is on thyroid hormone replacement - especially T3 - one can't have naturally high T4 levels. Taking exogenous hormone lowers the TSH - T3 usually suppresses it - and the thyroid cannot make hormone without the stimulation of TSH.
Usually, people on T3 mono-therapy just cannot tolerate T4, that's why they don't take it. T4 makes me quite ill.
Could it be because the T4 levels have run down for example and I can get more benefit from the T3?
No, it couldn't be that. T4 cannot suppress the action of T3. And it doesn't run down. T4 is basically a storage hormone that doesn't do much until it is converted into T3. Unconverted, it hangs around in you blood for about 7 days. So, if you are taking the same amount every day, you always have much the same level in your blood.
Pretty certain you have adrenal fatigue and that's what's causing these problems. Have you ever had your cortisol tested?
Word of warning: do not mention Adrenal Fatigue to a doctor. They don't believe in it!
Yes, I have Hashimotos. Yes, I’ve been diagnosed with adrenal fatigue years ago (saliva testing) but blood test was “fine” according to the NHS. I gave up with the adrenal fatigue theory as there didn’t seem to be anything I could do about it. I followed the Wilson diet, spent hundreds on supplements but I’m still in the same boat years later. I wonder if taking my T4 & T3 at night will help alleviate some strain on my body (if it is adrenal fatigue). Presumably, I’m not one of those people who would fair better on T3 only…I’m guessing not because I pick up in the evenings and I’ll still have plenty of T4 in my body…
I’m afraid I’ve nothing to add TiredMummy as I’m in a similar boat to you but don’t take T3, I’ve taken it for short bursts in the past but always end up feeling crap and I think, like GG explains, it’s a cortisol thing. All thyroid hormone worsens the ‘morning hangover’ for me, except in the 1st couple of weeks of taking it and like you, I feel much better at night. Almost ‘normal’. I’m interested to see what others reply.
OK; so the Hashi's could account for the high FT4.
I'm impressed that you actually managed to get diagnosed with Adrenal Fatigue, that doesn't happen very often. But, giving up on it won't solve the problem. What supplements were you taking?
Why do you think you wouldn't do better on T3 only? Why do you think you would still have plenty of T3 in your body? If you stop taking levo you won't have any, as I explained above.
Well, I wasn’t diagnosed on the NHS (blood test) but was diagnosed by a functional nutritionist (saliva test). I can’t remember what supplements I was on but could probably dig it all out if necessary. Any recommendations on supplements? My vitamin levels were tested recently and were pretty good. I take vitamin C,D, K2, magnesium citrate, zinc, b complex, fish oil and probiotics.
Adrenals need all nutrients to be optimal but especially B vits and vit C. They also need plenty of salt. And early-morning protein. Do you have breakfast as soon as you get up? Is it high protein?
I have breakfast 1.5-2 hours after rising (sometimes a little longer) as I take my thyroid meds when I wake up and sometimes don’t have time to have breakfast until after the school run. I have a homemade muesli made of GF oats, seeds, macadamia & pecan nuts, dried cranberries, fresh strawberries with almond milk. So nutritious but not terribly protein rich.
Just to add, looking at peoples kind responses that I need to consider taking all my thyroid medication in the middle of the night/early hours of the morning.
Well, if you started taking your thyroid hormone in the middle of the night, that would allow you to have your breakfast first thing. You just need to add a bit more protein. Do you eat eggs? They're a very good source of protein. Worth a try.
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